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Fight rare neuro-immune disorders. Together.
My TM Life. My name is Margaret Shearer and I recently moved from Prestwick West Coast to Glasgow City, Scotland, UK.
I awoke on the morning of 31st December 2001 with terrible chest pains. I convinced myself that I had heartburn but as the pain became more severe and breathing difficult, I was taken to the ED at Mount Sinai Medical Centre on Miami Beach and admitted.
Four days later, I was diagnosed with Acute Idiopathic TM (T1-T8). I was given intravenous steroids and many other meds. I continued to remain at Mount Sinai receiving excellent treatment, including physical and occupational therapy. My three sons, who were all studying Medicine at home in Scotland, convinced me that it would be in my best interest to remain in the United States, as there were no TM specialists in the UK.
By March, I was fit enough to fly back to Scotland hoping I would continue to make progress and return to work. I required full-time, around-the-clock care in my own home and attended the Douglas Grant Neuro Rehab Centre in Ayrshire, where because of the staff’s skills and rehabilitation, I was able to discard my body brace and leg splints and I learned to walk again over short distances with the aid of a walking frame and ankle splint.
During my initial stay in Mount Sinai, my neurologist told me that I would be able to find out more about my condition on the TMA web site. I found a UK contact, Geoff Treglown, and emailed him that I was returning home and would be interested in any information. Within a few days of my arrival in Scotland, Geoff phoned and offered support and became a dear friend and confidante.
In October 2003, I was able to take up his invitation and attend a support group meeting in Manchester. For the first time, I met people with TM, including Sandy Smith from Fife in Scotland who, like me, had driven more than five hours to attend this meeting. I was thrilled to hear so many stories from such a courageous group of fellow human beings. Aware that no such group existed in Scotland, I asked Geoff to enquire if any people in Scotland were interested in a group meeting. In November, seven people attended the first Scotland TM Support Group in Glasgow. Since then, our numbers have grown to over 130.
Reading about Cody Unser going scuba diving I decided that that would be my challenge so I started training at a local swimming pool and completed my ocean dives in the Mediterranean to gain my Open Water Scuba Diving Licence. The fact that I was in a wheelchair made no difference to my instructors. I have since dived in Australia, the Red Sea in Egypt, Indonesia, Thailand and the Great Barrier Reef with my youngest son as my ‘buddy’.
In 2006 and 2007, I had recurrences at C7-C8 and then C3-C4 when Prof Doug Kerr became involved, as recurrences are rare. After meeting with him in Glasgow, his medical report resulted in a new neurologist who put me on immunosuppressants and my diagnosis changed to Recurrent LETM.
Presently, I am still in constant pain, which permeates my upper back area. I can walk for short distances with my walker, but I use my wheelchair outdoors as I can fall without any prior warning. My left leg has regained mechanical function, but not sensory. My right leg has no function and feels like its in icy water! My right arm has regained some (3/10) strength, but spasms when overused. I get banding in my truncal area and have hyper sensory issues. I have learned to self-cath (Botox every six months) and use Peristeen System every two days to empty my bowels.
TM has changed my life in so many ways, but the people I have had the privilege to meet because of it have been both gratifying and joyful. I have superb support from my GP, Urologists, Neurologists and all of my family and friends. No words could express the level of kindness, care and support that has been shown to me.
Despite having to use a wheelchair, I have learnt to drive x3, become an advanced scuba diver specialising in deep sea wrecks, continue to be a Victim Support Scotland Volunteer for the last 19 Years, be trained in Access Auditing, and worked at the Glasgow Commonwealth Games. I have founded and chaired the Scotland Transverse Myelitis Support Group www.myelitis.org/scotland and the European Facebook Group for Parents of Children affected by TM, NMO, ON, AFM and ADEM. I travel worldwide to visit family and have met other TMers in Singapore and Australia.
My hope is that others will experience as many positive adventures and look back and wonder, as I do, at how much they have accomplished, but its only possible with support received from everyone especially family and friends. My hope is that others acknowledge and are grateful for the work done for all of us by everyone involved in the TMA especially Officers, Committee, Medical Teams and Board, too numerous to name personally. Thank you seems such a small word to impart but means so much when said from the heart and this one surely is, THANK YOU EVERYONE.
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